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Daily Journal with Mitochondrial Myopathy

Day by Day with a Movement Disorder

My Journey with a Mitochondrial Disease - "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31 KJV

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Diagnosis in 2006 - Parkinson's Disease and Peripheral Neuropathy, then in 2007 - Essential Myoclonus. Finally in 2011, after a muscle biopsy, I was diagnosed with Mitochondrial Myopathy as well as Peripheral Neuropathy.

Share my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!

Tag Archives: probiotics

Eating Habits Changed

Day by Day with a Movement Disorder Posted on October 26, 2017 by DBJune 6, 2019 2

I’ve never liked to cook, so over time we’ve changed our eating habits from cooked to raw. We’ve been eating salads for lunch for several years. But thanks to The Energy Blueprint* program, our lunch salad is now gigantic. And we eat largely raw for breakfast and supper as well. We like to eat out several times a week, so that’s the only time we eat a completely cooked meal any more.

We consciously eat fruits and vegetables of different colors every day. That way we get a wide variety of phytonutrients without having to take so many pills. And we intentionally vary the fruits and vegetables we buy each week to add even more variety to our meals.

We do still eat some meat, and we keep hard boiled eggs handy at all times for added protein. Occasionally I’ll fix an omelet with coconut oil and lots of veggies. Hubby still eats bread, but I rarely do. Once in a blue moon I’ll fix organic oatmeal, but I try to avoid gluten grains.

Trying New Foods

I’ve discovered purple potatoes! These little new potato size wonders have purple skin AND purple insides. The color means they are extra rich in anthocyanins, which are very powerful nutrients with many health benefits. Since I’m a Type II diabetic, I boil a pot of them at the beginning of the week and then eat them cold. Sometimes I have them for breakfast and occasionally for supper. I add them to our lunch salad sometimes. Cold potatoes have what is called resistant starch, which does not create an insulin spike the way hot potatoes do. Of course I eat the skin, too.

When I eat the potatoes, I also have fresh fruit, such as raspberries or blueberries, or red grapes. And we’ve discovered a kind of grapes I had never heard of before – Moon Drops! They are long! Sometimes they are almost as long as my little finger! And they are such a dark purple they look almost black.

And I’m eating WAY more blueberries than I ever have before – usually at every meal. Dark blue, purple, and red fruits and vegetables, plus lots of different greens make up a large part of our diet now. We had made salads with spinach for many years, but now our salads also include arugula, butter lettuce, and watercress. We had tried kale in the past and didn’t like it, so that’s not been included.

Eating Fermented Every Meal

I make milk kefir every day now, something I had never tasted before going on the Energy Blueprint program. But one of the suggestions in the Blueprint is to eat fermented foods at each meal. They have way more probiotics in them than any supplement we could be buying. I make a “cereal” with pecan pieces, flaxseed meal, and kefir most mornings. I’ve always liked yogurt and cottage cheese, so it was not surprising that I like kefir. It’s a little like buttermilk, but tastes a little different to me. I bought the starter online, and it only takes a few minutes to make a full glass for each day. I’ve always loved milk, but as I have gotten older, I’ve become lactose intolerant. The kefir grains digest the lactose in the milk as they ferment it, so it’s not been a problem for me to digest it. And it increases my calcium intake – something I need, since I have Osteopenia.

I’m also learning how to make my own sauerkraut. And, again to up the nutrition value, I make it with purple cabbage! I’m still experimenting with how to do this easily, and have had one complete flop that I had to throw away. I don’t like a lot of salt, so it’s a matter of using enough salt in the brine to keep it from spoiling, without getting it so salty I can’t stand it.

Sprouting Seeds

Another new discovery for me is sprouting seeds. Sprouts are a powerhouse of natural energy and nutrition. Hubby bought a big container of alfalfa sprouts from the store to add to our ever growing salads, but it went bad before we could eat it all. After doing some research, I discovered that broccoli sprouts are way higher in nutrition than grown broccoli florets. And I’ve always had digestive troubles with raw broccoli, anyway. But growing my own broccoli sprouts has been easy, and I eat them with every meal now – even breakfast.

Healthy Oils

Since we’re not cooking at home, we’ve had to make an effort to get the good fats in our diet. Improving our fat intake is still a work in progress. I get some fat from my whole milk kefir every day, and a little bit of olive oil from the vinaigrette salad dressing we use. Hubby eats yogurt every day, but he usually eats the low fat kind, so that doesn’t help as much as the higher fat types would. I try to eat an avocado every day, as well. And we eat pecans and walnuts every day. We also take MCT C8 oil several times a day. It is a brain boosting fat made from coconut oil.

Changed Eating Habits = Better Health

All these changes from the typical Southern fried foods diet has not happened overnight. We took the first steps in changing our eating habits when I was diagnosed with Type II Diabetes. We gradually moved away from frying, then stopped cooking everything, and finally stopped buying processed foods almost entirely. The Energy Blueprint program encouraged me to increase my intake of raw fruits and vegetables. And today I can honestly say I am feeling more energetic than I have felt in decades. Diet is not the only thing I’ve changed while following this program, but it’s certainly an important factor in my improved health.

Posted in Nutrition | Tagged energy, fermented foods, nutrition, probiotics, raw foods, sprouting seeds, The Energy Blueprint, whole food plant based diet | 2 Replies

Tear Duct Is Better?

Day by Day with a Movement Disorder Posted on March 26, 2017 by DBMarch 28, 2017  

Tear Duct

I wouldn’t say it’s completely open, but my tear duct appeared to be better this morning. I went to my eye doctor for the last time with this issue on Friday, I thought. The infection appeared to have finally calmed down. I definitely didn’t have the big painful knot in the corner of my eye then.

But I DO have a small knot there that has puffed up during the day today, so will be calling the eye doctor in the morning to see if I should go back on the antibiotic eye drops.

He used a syringe (no needle of course) of fluorescent liquid in the tear duct openings, top and bottom, and tried to find signs of the bright yellow color in my nostril. No such luck. Then he pushed a whole syringe of saline through. I could feel the pressure, although he had numbed my eye. Still no fluorescent signs in the nostril.

BUT, when I pressed on my eye to wipe off all the liquid around my eye – it squirted out my nostril! He thinks the pressure of pushing the saline opened the duct up at least part way.

Since it’s puffing back up some today, I’m wiping tears more than I was, too, draddit. Hopefully this is swelling from the poking he had to do Friday, and not more infection.

Antibiotics

I’ve now been off oral antibiotics for two weeks and antibiotic eye drops for three days. My digestive system appreciates that, for sure. Of course I’m still taking the probiotics. I am very thankful that all these antibiotics have not caused any tummy issue. I used Zofrin and the probiotics to protect my system. The Zofrin was causing constipation, so I went back on my MiraLax to combat that. So at least my gastric system is happy.

ENT

I’m ready to make an appointment with my new ENT. The eye doc has done all he can for this mess. I’m still having thick mucous discharge down the back of my throat. I’m clearing my throat constantly, just as I was all last year. And that’s keeping my throat irritated and my voice hoarse.

MITO

One thing’s for sure, when you have a mitochondrial disease, you never know how your body is going to react to any situation. I’m just thankful for doctors who understand that I’m not a typical patient!

 

Posted in Quality of Life | Tagged antibiotics, healing, Miralax, MITO, pain, probiotics, sinuses, swelling, tear duct, Zofrin | Leave a reply

Align = Feeling Better

Day by Day with a Movement Disorder Posted on November 14, 2009 by DBMay 21, 2016  

Well, the Align probiotic that my Gastro’s nurse told me to use has definitely helped my stomach. I’ve not been nauseated this morning for the first time in almost two weeks, and it feels great. I’ll continue to be more careful than usual with what I eat for another day or so, just to be on the safe side, and I’m going to finish out the month’s worth of the Align. Then I’ll go back to using the generic Acidophilus I’ve been taking daily for the last couple of years.

I did go back to using the Triavil, which is used to treat IBS, for the full 3 doses. My Gastro had just recently suggested that I cut back to 2 doses a day, and to see if I still did OK. I had cut back a few days, but then all this stomach upset hit, and it just didn’t seem like a good time to be changing things. So I’m not sure when I’ll try cutting out a dose just yet.

I did lose another pound this week, which isn’t too surprising, since I haven’t felt like eating a whole lot. I was actually hungry last night by supper time, and that’s another good sign that things are returning to normal. I haven’t felt like exercising, and really didn’t think it was a good idea while I felt so bad, so now I need to slowly work my way back into that routine.

The mouth tics subsided a couple of days ago, but I’ve been waiting to be sure they were under control again before jinxing it by saying anything about it. I’m not sure if the strong antibiotics neutralized the Primidone, or if it was just because I felt so bad. Maybe it was because everything, including medicine, was going through my digestive tract at high speed for a change. Who knows…

The important thing is that I can tell I am finally getting over it, and that’s a wonderful relief. Particularly since Thanksgiving is getting so close, I’m glad I can look forward to being able to eat with the family. I had already decided that I would ignore my glucose readings for that day and just enjoy being with everyone and enjoy the food. Then I’ll go back to the 1200 calorie diet I’ve been on since April and continue to limit my carbohydrate intake. I’ve been giving myself a splurge meal about once a month, anyway, so this month it’s for Thanksgiving.

In a effort to prevent another UTI, which started this whole snowball effect of digestive problems and Myoclonus tics, I’m trying to consciously be sure I have completely emptied my bladder each time I urinate. When I became so conscious of it, because it was painful, I realized that I haven’t been emptying totally, probably for some time. The nerves that send such messages just don’t work as well as they did when I was younger, or before the neurological disorder reared its ugly head. And, from what I’ve read, diabetics are more prone to this problem, too.

So, it’s a good day today, and I can look forward to many more, as long as I continue to persevere with a good healthy diet and exercise program and take my meds religiously.

Posted in Medicines and Supplements | Tagged Align, diet, elimination difficulties, Essential Myoclonus, exercise, Gastroenterologist, IBS, probiotics, tics, Triavil | Leave a reply

Puny

Day by Day with a Movement Disorder Posted on November 11, 2009 by DBMay 21, 2016  

It’s not been a very good last couple of weeks for me. It all started Saturday a week ago when I woke up with a urinary tract infection. I didn’t think trying to tough it out until Monday sounded like a very good idea, since I’m diabetic, so we went to a doc in the box early that morning, and he confirmed my diagnosis.

They gave me a shot of antibiotic, plus a prescription for an oral antibiotic and some kind of urinary tract analgesic that turns urine blue. Also, since I had just finished taking a round of antibiotics for a root canal, they gave me a prescription for Diflucan, so I could deal with the likely yeast problem all those antibiotics would cause.

It took several days before I really felt less pain on urinating, but by then my stomach was upset from all the antibiotics. I started eating less and eating mostly bland foods, so my whole diet has changed. I also had some Greek yogurt and blueberries, thinking that would be good for both the tummy and the potential yeast problem. Nothing I’ve done so far has gotten rid of the nausea, although the diarrhea is under control. For now I’m sipping on diet caffeine free ginger ale.

I talked to my Gastro’s nurse today, and she told me to start taking Align, which is, according to her, the best probiotic I can use. I told her I was taking a generic acidophilus daily anyway, but she said this Align would work better to replace the good bacteria that the antibiotic killed off. She also said to stay away from spicy foods or anything fatty or acidic. I’d already been doing that. But, she said it would be OK to eat the raw vegetables we normally eat for lunch, which I had not been doing.

And then, out of the blue, on Sunday afternoon my mouth started the tics again. My tongue is thrusting, and my lips are involuntarily squirming around. I hate when it does that. By the end of the day my whole face hurts from all the extra movement. This is the first time I’ve had any of these Myoclonus jerks on my face since I went on the Primidone.

I had hoped it would go away on its own overnight, but woke up to the same thing Monday through today. So I took an extra Primidone pill and have been doing that ever since. So far it’s limited the squirming somewhat, but not completely. I’m hoping that when my tummy gets back to normal and I feel better, that the Myoclonus will behave itself again. If not, I’ll have to put in a call to my Neuro.

So I’ve not been having a fun time the last few weeks. I’m still looking forward to Thanksgiving with family, so I’ve just got to get better before then!

Posted in Symptoms | Tagged antibiotics, Essential Myoclonus, nausea, Primidone, probiotics, stomach, urinary tract infection, UTI | Leave a reply

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